When a doctor suggests not treating a treatable condition in your child

By Louise Kinross

In response to a story we did about a study looking at how the diagnosis of Down syndrome influenced whether patients with Covid pneumonia received a do-not-resuscitate order at hospital admission, we heard from parents who said a doctor had suggested they not treat a treatable condition in their child with disabilities.

Here is one parent's experience:

"The same thing just happened to me with my [adult] son with pneumonia. It was very disheartening. The more I think about this the more angry I get. My son was hospitalized early July. He has cerebral palsy along with other issues. He was born prematurely at 30 weeks. When he was brought into the critical management unit here, they told me that he is tired and we should consider just making him comfortable. I was so upset. Luckily my husband fought back. But at that moment in time I felt like his life had no value to anyone but us."

BLOOM reached out to two clinicians for comment, and asked about how parents might respond in this situation.

Dr. Eyal Cohen, a pediatrician at SickKids Hospital in Toronto and co-founder of its complex care program:

Unfortunately, I do see this. Some clinicians struggle with removing their own biases about what is in the best interest of the individual and discount the expertise of families. A minority of clinicians, but unfortunately not a trivial one, may hold beliefs that individuals with a neurodisability and lots of medical issues need to be palliated.

I think what also happens to many clinicians who say these things is they become guilty of 'fast thinking' in the emergency department setting. They make snap judgments without incorporating the expertise of caregivers, and/or without recognizing their own preconceived ableist frameworks. 'Fast thinking' is good a lot of the time, otherwise emergency departments would be even busier than they are, but can lead to harm in complex situations such as the care of an individual with special needs. 

My advice to a family would be to ask questions to 'slow' the process down by probing the 'why' and the 'what.'

For example:

'I appreciate your advice, but I've seen my child tired many times, and this isn't what they look like. Can you help me understand why you are making this recommendation?'

'When you say make him comfortable, what do you mean? What are you recommending be done, and what are you recommending not be done?'

Dr. Franco Carnevale, clinical ethicist, psychologist and nurse at McGill University in Montreal: 

This is unclear communication by the clinician. The clinician's interpretation and proposed treatment plan is ambiguous and will likely lead to an invalid consent by the parent. Although the term 'making him comfortable' appears benevolent, which is likely why it is used, it commonly implies a decision to withhold all treatment that would prolong life, and to shift toward high-dose sedation, even at doses that may hasten death by suppressing vital functions.

Parents can first ask for a clear statement of what the acute problem is, such as an infection. Ask what treatments are available for that problem, and how effective they are (while also understanding that the clinician may be trying to 'treat' the disability, pre-judging that the child's life is not worthwhile and not worthy of treating arising problems). 

These are standard questions for informed consent. If these are not explained to the parent, the consent is not valid. If the parent feels discounted or bullied or coerced (which means the 'free' part of 'free and informed consent' is not respected), then they can express dissent, or non consent, to the proposed plan, and ask to speak with the patient representative or ombudsman.

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